Support for Bereaved Families in Western New York
Losing a child is an unthinkable tragedy for any parent. For families faced with this reality, it’s difficult to comprehend, and painful to talk about. And yet Jonathan McGrath, who lost his two-year-old son to cancer, has found healing, hope and purpose by talking and taking action. In fact, Jonathan’s loss has led him to a career at P.U.N.T. Pediatric Cancer Collaboration (PPCC), a path that enables him to carry his grief and nurture his son’s legacy by sharing his experience and empathy with other families facing similar circumstances.
“When you lose a child, you realize that the worst thing that could possibly happen to you has happened,” said Jonathan McGrath of the experience he shares with other bereaved parents. He went on to explain that “the second worst thing would be to forget your child, and not say their name, and not do your due diligence and make sure that they continue to make an impact.”
Jonathan remembers the Friday afternoon in March of 2021 when he received a phone call from his wife, Ashley. He had been working in the desserts category at Rich’s for a little over two years while Ashley was staying home to raise their two boys, Henry and Cooper.
“Ashley called me at work and said that Cooper had thrown up at lunch,” recalled Jonathan of the day that forever changed the life of his young family. “We didn’t think much of it at the time. We thought maybe he had a stomach bug or something.”
Cooper’s condition steadily declined in the following hours and the McGrath’s struggled to make the toddler comfortable enough to sleep. Within 24 hours it was clear that something was wrong with Cooper, so Jonathan and Ashley took him to urgent care where doctors immediately began to run tests. Early indications pointed to the possibility of meningitis. Even at that diagnosis, Jonathan remained positive. He was confident that his family could manage whatever came their way.
It wasn’t until doctors suggested that Cooper be transferred to Children’s Hospital by ambulance that Jonathan’s stomach knotted. Minutes and hours flew by in a blur, but some moments were seared in Jonathan’s mind, including conversations he wished they had never needed to have. More tests were run after Cooper had a seizure and the results confirmed the worst-case scenario: there was a tumor the size of a baseball on the left side of his head. In the days that followed, Cooper underwent two surgeries, one to reduce intracranial pressure and a second to attempt to remove as much of the tumor as possible.
“We spent the next 60 days in the pediatric intensive care unit. We were all fighting for our lives to be honest,” described Jonathan.
Cooper passed on May 21, 2021. The McGrath family struggled in the wake of their sudden and immense loss. Grief stricken and numb, Jonathan was unable to return to work. On some days, his pain was so intense that it was difficult for him to even get out of bed. Under the Family and Medical Leave Act (FMLA), Jonathan took time off work, but the family still had bills to pay.
“P.U.N.T. became aware of our situation and began providing essential support to our family while I was off on FMLA,” recalled Jonathan. “They covered our mortgage costs and provided emotional support.”
After experiencing the impact of P.U.N.T. firsthand, Jonathan began to feel as though he had a skill set that he could contribute to the organization. He soon began working as the Development Manager for PPCC.
“It’s still difficult,” said Jonathan. “Every day is hard. But P.U.N.T. gives me a purpose and a means of continuing Cooper’s legacy through the work.”
PPCC Executive Director, Gwen Mysiak, can empathize with the McGrath family. In 2011, she lost her nephew, Andrew, to pediatric cancer and witnessed her family struggle with the financial and emotional ripple effect. She began looking for gaps in the community and opportunities to make a difference in the lives of families dealing with a pediatric cancer diagnosis.
Jonathan describes PPCC’s programming as both practical and direct. PPCC is 100% community funded and every dollar they raise goes to support families right here in WNY. Social workers in area hospitals provide the crucial connection between PPCC and families in need.
“We talk with social workers daily,” said Jonathan. “They are the critical link for us because the need varies greatly. Some families are being supported by strong community fundraising campaigns while others’ lights are being turned off. We make sure we take care of the families who really need their basic needs covered, and then we go from there.”
PPCC’s Helping Hands program was established to help alleviate financial stress by offering bill paying programs to offset housing and medical costs. The Locker Programs address daily needs, offering prepaid gas and grocery cards and vouchers for food and parking at local hospitals.
“It’s really important that PPCC offers this type of support because nobody really thinks about how much the treatment and care are going to cost a family out of pocket,” explained Jonathan. “To many of the families fighting this kind of battle, a $50 grocery card is so much more than just a grocery card for $50.”
Despite the urgent need for financial support, the cornerstone of PPCC’s programming continues to be the remembrance weekend, known as their Ultimate Compassion program. The annual three-day bereavement retreat offers families a mix of therapeutic and social opportunities that provide hope and healing, along with strategies and tools for coping, supporting one another, and honoring the memory and life of their deceased loved one. The event, which has been running for 10 years, is open to anyone who has lost a child to cancer, whether it happened two years ago or 20 years ago. Jonathan said members of the cancer care teams from local hospitals and hospice centers also attend portions of the event, and the opportunity for families to reconnect with caregivers who were intimately involved in the treatment and end-of-life care for their loved ones is incredibly meaningful to everyone involved.
“Through the remembrance weekend events, my family has formed friendships and bonds that have really kept us afloat during uncertain times,” said Jonathan.
PPCC also runs a small wish granting program, called Field of Dreams, and Andrew’s Game Day from suite 238A at Highmark Stadium where immunocompromised youth going through cancer treatment have an opportunity to step away from their diagnosis for a day and safely cheer on their favourite team with friends and family.
In May 2024, PPCC held WNY’s second annual Grief Training and Child Loss Symposium. In partnership with the Erie County Department of Mental Health and Rich Family Foundation, PPCC brings in trainers and keynote speakers from the acclaimed Dougy Center in Portland, Oregon, the National Center for Grieving Families and Children. The event supports professionals and practitioners with opportunities to learn how best to support families through loss and invites bereaved parents from WNY to attend a free event offering healthy and helpful responses to grief, tips for supporting other family members, and ways to honor a child’s life.
“We weren’t sure what kind of demand we would see for the Grief Training event, but the response was overwhelming. It was clear that the people who work with grieving families everyday want to know more, they want to know the best practices to help, and they were eager to connect with experts and learn how to handle different situations,” remarked Jonathan.
That demand was further underscored when Assemblywoman Monica Wallace attended the 2024 event to announce at $500,000 state-funded grant to help build the first grief center in Western New York. The center, to be operated under P.U.N.T., will offer counseling and support groups to parents and kids dealing with grief and traumatic loss.
The inaugural Child Loss Symposium in 2023 was the first time PPCC expanded their programming to support and connect families who have experienced loss outside of pediatric cancer. The event featured breakout groups organized by origin of loss. When Jonathan emerged from the pediatric cancer breakout group, he noticed that participants weren’t in a hurry to leave their group, they were mingling, embracing and sharing stories.
“That’s the type of connection you want to build on,” explained Jonathan. “Experiencing this kind of a loss is not something you can fix. But we can try to give people tools to be able to carry their grief and people to contact in times of need. Those boxes were absolutely checked for people who attended the Symposium.”
Feedback from practitioners and parents in attendance at the event and response from a corresponding article in the Buffalo News was proof positive that the event was long overdue in WNY.
“Many of the organizations that supported and attended the event said this was something we really needed in the community,” said Jonathan. “Grief and loss are not things people want to talk about. It’s a difficult conversation and a lot of people are just not equipped to have it, and that’s okay, I don’t wish this on anybody. But having the conversation on the front page of the newspaper is helping people get ready to talk about this, which is an important step because so many people are going through a lot more than you would think.”
Rich Family Foundation is a proud partner of PPCC and an ally and advocate for these critical conversations by sponsoring essential training and connection opportunities for practitioners and families in WNY.
“The work that P.U.N.T. Pediatric Cancer Collaborative is doing is so crucial,” said Kevin Aman, Vice President, Community Engagement, Rich Products. “They are supporting families during their darkest hour, and providing social, emotional and financial support so that parents can focus their attention on what matters most: managing their grief and remembering their child.”
Jonathan says his work at PPCC gives him the strength to get out of bed each day. He takes pride in knowing that through his role, Cooper continues to make a difference.
“For me, this work is about legacy. It’s about being around good people and just making a difference while we’re here,” explained Jonathan of his career shift. “To be able to work with people every day who have the same level of empathy and the same level of passion for this mission makes me feel supported.”
Jonathan has stayed in touch with many of his colleagues from Rich’s and expressed appreciation for the partnership PPCC has since formed with Rich Family Foundation to further the organization’s mission, as well as the support and compassion still shown to him personally.
To learn more about getting involved through volunteerism or to contribute to PPCC programming, visit PuntPediatricCancer.org/get-involved/.
